TTC and subclinical hypothyroidism

[Owl86]

Hi all

I'm 34, and my husband and I have been TTC our first baby since January. We've had no luck yet, but realise it's still quite early days.

However, I recently had a blood test after an ultrasound found a polycystic ovary. This came back negative for PCOS, but showed my thyroid function was out of whack. My TSH is 4.93, higher than the reference range, and my free T4 is on the lower (but normal) side at 14.7. So my GP told me I'm subclinically hypothyroid.

Not really knowing anything about thyroid issues, I asked what this meant for fertility and pregnancy. The GP said some fertility specialists like TSH to be under 2.5 when TTC, but it's more about optimising the body for conception than anything else. They didn't suggest medication right now, but said if I'm still not pregnant within the next 2-3 months they'd repeat the tests (with an extra check for thyroid antibodies/Hashimoto's disease) and refer me to the fertility clinic for advice if my TSH is still high. But if I do become pregnant, nothing further needs to be done.

I've since done my research and it doesn't seem to tally with what the GP said. As I understand it, for a healthy baby and pregnancy TSH levels should be below 2.5 and T4 ideally on the higher end of the normal range. And the NICE guidelines seem to suggest we should delay TTC
until I'm medicated and my levels have normalised and stabilised: cks.nice.org.uk/topics/hypothyroidism/management/preconception-or-pregnant/

I'm not sure how far I'll get with the GP, as they admitted they're not totally clued up on these matters. So I've ordered an advanced thyroid self-test kit to get a full picture of what's going on. I'm then thinking about seeing a specialist privately for advice on whether I should be taking thyroxine or not.

For anyone who's been through similar, my questions are:

1. What sort of specialist would be best to see? An endocrinologist or fertility specialist/reproductive endocrinologist?

1. Once on medication, how long did it take to get your thyroid hormones to the right level for TTC and pregnancy?

1. Do you have any suggestions or advice? I'm feeling rather unsure and overwhelmed by the whole thing.

Thanks so much in advance. :)

[CTMcG]

Hi @Owl86

Unfortunately i have no input but would like to follow this thread if you dont mind. Start of the year, my doc told me my bloods came back ok but that in 6 months time i could have an underactive thyroid so i am assuming i was borderline. I rang them on Tuesday and explained i was ttc and that can i get booked into check and i should get results tomorrow so preparing for the fact that I may be also he hypo and what i should do. This is my first month ttc#1 d

[Owl86]

Hi @CTMcG

Yes, of course. Good luck for your results tomorrow - please do let me know how you go and what you're advised to do if things are a bit wonky, as I'll be very interested to hear.

I actually had another thyroid function test in 2015, and apparently I was subclincally hypo then too - but no one told me at the time! I only found out yesterday when the GP rang about the latest results.

[Grinch1]

Hi Owl86

Thought I would put my experience in for you. In 2014 I suffered recurrent miscarriages. Some routine bloods picked up that my thyroid function was majorly off and I later found out I had hashimotos and carried large levels of antibodies. I was referred onto an amazing endocrinologist. I was immediately started on medication and fell pregnant 3 months after starting meds and carried successfully to have my wee boy now 5.

I am now trying for number 2. My levels have fluctuated over the years despite the medication. I would maybe push for an endocrine referral.

I hope you get some answers soon. I remember the horrible uncertainty well.

[naomi81]

I managed to conceive with a similar tsh to you, took about 6 months. However after having my baby my tsh shot up to 37 and now I am on medication for life, not tried for a second yet, good luck 🤞

[Cheburashka]

I could have written your post..
In short: yes your tsh needs to be below 2.5 (ideally around 1-2).
It takes 4 weeks of medication for it to reach the rabge you need
You are best speaking to a fertility specialist instead of endocrinologist (this is what we did)
When you are pregnant, test your tsh every 6-8 weeks (what we did). The first trimester is the most important. I remember booking blood tests for the day after l found out I was pregnant and going for tests at set intervals after. Also, after you get pregnant your body will need a bit more thyroxine so it’s normal to increase your dose by around 25-50mcgr over the course of the pregnancy and then revert to pre-pregnancy levels. Good luck, its doable, just needs monitoring!

[Owl86]

@Grinch1 Thanks for sharing your experience and for the well wishes. It'll be interesting to see what my antibody test shows up. Congrats on your little boy and good luck TTC #2!

@naomi81 Wow, a TSH of 37 sounds super high! Glad you managed to conceive and hope the meds keep you on an even keel.

@Cheburashka Thanks so much, that's all really helpful. 4 weeks doesn't sound too bad, I wondered if there could be a lot of trial and error trying to get the dose right? I'll see what fertility specialists I can find, I've only looked at endocrinologists so far.

[ChinChilly]

Hi

At my last blood test in Feb my TSH was 4.1 about 10 days later I found out I was pregnant sadly ended in MC shortly after. I'm pregnant again now, still early days. But I've mentioned to my GP time and time again about my TSH and TTC and pregnancy and even after the MC i was told that those levels were normal for me and within the normal bracket so they wouldn't do anything so I've given up trying.. It is possible to conceive with higher TSH but i think there is a higher risk of MC.

On another thread alot of the ladies who had come of hormonal contraption had elevated TSH for a while so maybe there is a link? TSH and general tyroid health seems like abit of minefield

Good luck OP

[Owl86]

Hi @ChinChilly, thanks for sharing. I'm really sorry about your loss, and I hope things go much more smoothly for you this time around.

I found this on the British Thyroid Foundation website, I'm not sure if it might be useful to wave in front of your GP? www.btf-thyroid.org/pregnancy-and-thyroid-disorders-guidance-for-patients

I've never been on hormonal contraception myself, but that's interesting about the comments on the other thread. It definitely seems like a bit of minefield, like you say!

[ChinChilly]

Thanks for the info @Owl86 I'm going to try contact them again!

[FlyingGiraffe]

@Owl86 I feel like I could have written this too! I'm 35, had bloods taken at the end of March and my TSH was 4.96 and T4 was 14.7 so almost identical to yours! We've been trying since last August and had one chemical pregnancy back in January. My GP has admitted to not knowing a lot about thyroid affecting fertility and like yourself, I'd since read into it with the NICE guidelines and the British thyroid association and found it to be pretty overwhelming! I've got repeat bloods next month but she hasn't arranged for the antibody tests so I'm wondering whether I should go back to her about this... Now I've read the symptoms of hypothyroidism I feel i can relate to quite a few too. Keep in touch about how you get on.

@Cheburashka how did you find a fertility specialist that looked at the thyroid? I've been recommended somewhere but it looks like it deals with more ivf and clomid etc. Or do they all look like that but actually can do thyroid stuff? I'm hoping my gp will be open to listening next month provided I get a similar result to March.

@naomi81 its reassuring to hear that you conceived with a similar result.

P.s. hi @ChinChilly! 👋 hope you have luck with your GP this time 💛

[Owl86]

@FlyingGiraffe Sounds like our thyroids are twins... Spooky how close our results are!

My GP also admitted to not knowing much about thyroid function and fertility/pregnancy. Yesterday I emailed them to ask about getting the antibody test done now, rather than in 2-3 months time as originally suggested, because if I do need thyroxine I want to start ASAP rather than hang about. But I'm not sure how far I'll get, so I've already ordered a Medicheck self-test kit. Hopefully that'll give a more complete picture that I can show my GP and any specialists.

What bothers me is that a previous thyroid function test in 2015 showed I was subclinically hypothyroid then, with similar results to now, but no one told me at the time! I've had some symptoms of it for years, but a lot are quite non-specific - so it's hard to tell what's actually down to the thyroid and what might just be down to other things.

It's all a bit overwhelming like you say... And yes, let's definitely keep each other posted. :)

I had the same question for @Cheburashka about fertility specialists... I had a little look last night and the ones I found only seem to offer consultations about IVF etc.

@ChinChilly Good luck with your GP, fingers crossed you get somewhere this time!

[ChinChilly]

@FlyingGiraffe Hi 👋 thanks, I've got another appointment on Tuesday so fingers crossed I get somewhere.

[Cheburashka]

I asked my GP to be referred to a fertility specialist after more than 12 months ttc and several miscarriages.. Luckily, the specialist was very receptive, they usually deal with ivf but also helped me with thyroid advice. To be honest, he just “agreed” that my TSH needs to be below 2.5. I then took his letter and a print out of the british thyroid foundation recommendations for conception to my GP (yep, went in with a folder… 🤦🏻‍♀️) and basically told them “this is what the fertility specialist said, this is what the thyroid foundation says, so please prescribe me thyroxine and I’m having my levels checked every 6 weeks”. GP admitted they didn’t know this but were happy to follow the advice and did what I asked. Funnily enough, I was pregnant with my little boy after two months..

As a side note,and I don’t know if its relevant, but the only thing the fertility guy prescribed as an extra was progesterone pessaries for the first 12 weeks of pregnancy plus high dose folic acid. I felt these massively helped as well, particularly the pessaries but this could be just my case. Something to keep in mind though!

[Cheburashka]

Sorry, one more thing. The advice back then was that you can be referred to a fertility specialist after 12 months of trying unsuccessfully. This was definitely the case for me but I guess it can’t be proven 🤷🏻‍♀️

[Owl86]

@Cheburashka Thanks for the info. I'll bear that in mind about the pessaries. Are progesterone levels linked to thyroid function? Another thing for me to Google!

@CTMcG How did you go with your results today? Had my fingers crossed for you.

My self-test kit arrived today and my GP's booked me in for another phone appointment on Thursday, after I emailed them the NICE guidelines and British Thyroid Foundation info yesterday. And hopefully I'll have the test results back just in time for the call, so I'll know whether I have antibodies etc.

[CTMcG]

@Owl86 i rang and the receptionist told me that the results were back but the doctor hadn't checked them yet so there were no notes against it and to call back Monday😩

[Owl86]

@CTMcG Oh how frustrating! I've had that happen to me before too. Fingers crossed for Monday instead then.

[bumphope2020]

I had tests 12 months ago privately and TSH was 3. Gynaecologist said all good. Last week I finally had my first appointment with NHS after GP referral and they have asked for a retest and asked GP to prescribe thyroxine if over 2.5.
My advice would be to keep pushing your GP and if you do get pregnant try to get an appointment with a midwife ASAP to discuss medication

[Talkwhilstyouwalk]

You are right, it should be under 2.5. I'd go back to the GP and see if they could have a chat with a fertility specialist for you if they are unwilling to prescribe it themselves (although I had no problems getting my GP to do this for me during IVF treatment. You'll need a low level dose of levothyroxine for conception and pregnancy (probably not after you have given birth) and my bet is that you'll be pregnant shortly after you start taking it.

[Owl86]

@bumphope2020 Thanks for the info! I'll definitely keep pushing my GP. Given the NICE guidelines we've actually decided to put TTC on hold for this month, just while we try to sort things out a bit.

@Talkwhilstyouwalk Thanks for the advice. That gives me a bit of hope my GP will prescribe thyroxine after our appointment this week (or perhaps after they've spoken to specialist for advice, like you say).

[CTMcG]

@Owl86 had a missed call from docs surgery first thing this morning so knew it wasnt great news😭

I am subclinical hypo. The thing that they prefer to be 2 for trying for a baby, mine is at 6.

She said i had 2 options. Continue without medication and see if i fall pregnant or start on a small dose of medication to lower that number. I said at 31 i dont want to waste time so i went with starting medication. Im a bit gutted tbh, in work and just want to go home and cry even tho i know that is silly, i am going into cycle 2 so not been trying long but feel that news has confirmed this isnt going to he an easy ride, pardon the pun x

[CTMcG]

@Owl86 i should mention, the other part was within normal range hence why subclinical. Im very technical lol

At least she give me the option to start on small dose now instead of fobbing me off

[Owl86]

Oh @CTMcG, I'm so sorry it wasn't the news you were hoping for.

It's not silly to feel tearful - I was the same when I got my results last week. I'm trying to tell myself it's better to find out now, fairly early in my TTC journey, rather than after trying unsuccessfully for months when I'll be even older.

The good thing is it's treatable, so I'm glad your GP has offered you levothyroxine. What dose is she putting you on? I think I read 25mcg or 50mcg are common starting doses?

Take care of yourself and keep us posted. I'm always happy to chat, and it looks like there are several of us here in the same boat x

[CTMcG]

@Owl86 thank you, af is due this week so think i am extra emotional.

Yes 25mg she said. So DH collecting for me today as i am in work to 5pm and he is working from home so can nip out for me. God love him, hes trying to keep my spirits up and said sure you could even be pregnant now but i just feel it in my waters that i am not but yes, im doing something about it now rather than wait a year and then doing it x

[Owl86]

@CTMcG Hope your DH managed to get the prescription for you. 😊 I assume they're going to check your levels again after you've been on the 25mcg for a while?

I sent off my self-test sample today, after my DH and I had a palaver with the fingerprick kit. 😂 Hopefully I'll get the results in time for my next GP appointment on Thursday. Super nervous already.